Spotlight on IMAS
Shining a spotlight on the real-life impact of axSpA
The Spotlight on IMAS event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. On the eve of EULAR 2024, the Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine.
Andri Phoka, ASIF Trustee, welcomed everyone, provided an overview of IMAS and thanked Novartis for transferring ownership of IMAS to ASIF.
Professor Marco Garrido Cumbrera explored the IMAS findings and their real-life impact. Punctuating Marco’s presentation were videos from people around the world who shared the impact that axSpA has had on their lives. Annie from Australia shared how her delay to diagnosis led her not to have children; in Colombia axSpA prevented a young woman from working, leading her to be financially dependent on her father. Tsleng from South Africa described how she lost friends as they didn’t understand what she was experiencing. Andri from Cyprus shared how axSpA is just one of the physical conditions that she faces, alongside Chron’s disease and hypertension and how managing all her physical symptoms is incredibly challenging.
The recently published IMAS report, “The Burden of Axial Spondyloarthritis: a global patient perspective” underlines that axSpA is not simply a physical disease that needs to be treated. It impacts every area of a person’s life and life choices. Therefore, the average seven-year delay to diagnosis must be reduced and healthcare professionals need to consider the impact on an individual, focusing on quality of life and providing multidisciplinary care.
Dr Victoria Navarro Compán, President Elect of ASAS, spoke about her pleasure at seeing the IMAS project develop from the national survey in Spain in 2017 into a European and then a global initiative; the importance of the IMAS findings; and the potential of them to educate healthcare professionals and influence clinical practice.
Mike Mandelbaum, Executive Director of ASIF closed the main presentations by sharing ASIF’s plans for IMAS in the future. He shared that IMAS will be a cornerstone of a new advocacy strategy which ASIF will develop over the coming months.
He commented “Most change happens at local and national levels, so we plan for more of our work to respond to national and regional social and healthcare systems dynamics and priorities. We therefore plan a regional Latin American IMAS report, which will compare individual country data to aggregated regional data in ways which shine a spotlight on where individual countries are performing well or poorly against their closest peers. We believe this can become a powerful advocacy tool.”
Questions and a panel discussion followed the presentations, focusing on how the IMAS Report can be used at a national level.
Over dinner, attendees continued conversations about the impact of axSpA in their countries and how the IMAS Report can be used to leverage change.
Thank you to our presenters and to everyone who attended the event. If you have questions about the event, about IMAS or how you can use the IMAS Report in your country, please contact Jo Lowe.
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